Advocacy

Happy April! It’s APRIL already? How did this happen? Life moves too fast sometimes (when you’re busy running to medical appointments every other day, ha).

Well anyway, I’m happy that the weather is starting to get nicer and that Spring is approaching (hopefully). I’m also happy to be starting this little 30-day project for the month of April: 30 Days with RA.

I wrote an article about it recently for RheumatoidArthritis.net (the link above), which can give you a better, more-detailed explanation of the project, if you’re interested.

I just finished editing and posting the photos I took at last weekend’s “Jingle Bell Run/Walk” which was put on by the Arthritis Foundation’s Upper Midwest Chapter. It was fun seeing all of the people decked out in their crazy Christmas/holiday outfits. It was also great to see such a big turnout.

Here’s a link to the album on Flickr if you would like to see more photos:

Where does the time go? Seriously. So much has happened just within the span of a few weeks, but in a way it feels much longer ago than that.

OCTOBER: In late October I flew to New Jersey to participate in an advisory panel for a pharmaceutical company. It was a one-day consulting job, but I found it to be very professional, interesting, and a great chance to discuss RA and RA-related issues with others who are involved in rheumatology and healthcare.

After New Jersey, I decided to swing over to NYC for a brief visit (since I was in the neighborhood), and I had a wonderful time staying with my friend Holly in her little apartment in Hell’s Kitchen, Manhattan. It felt both odd and good to be back in New York, after I had to leave it so miserably and abruptly at the end of August. This time, I didn’t want to leave.

NOVEMBER: A week after I returned from NJ/NYC, I found myself on a plane yet again (I’m usually not such a jetsetter), this time heading to San Francisco for the annual Joint Decisions Empowerment Summit. This year it was actually held in Sausalito, which proved to be a perfect and beautiful choice for a location. The summit was excellent, as it was last year in Boston, and I will write a more in-depth update about that soon.

The last day of our Joint Decisions summit, most of us RA bloggers/activists traveled over to San Francisco to attend the American College of Rheumatology‘s annual meeting/conference. This was my second time attending and experiencing ACR, and wow, yet again I was impressed at its massiveness and global importance in the field of rheumatology and healthcare.

So right now, I’m desperately trying to play catch-up in the other areas of my life: work (substitute teaching, writing, photography), family, and my health.

Good morning! Why am I awake at 5:00 AM? The Juvenile Arthritis March (JAM) fundraising walk is this morning at the Mall of America! I’m taking photos again for the fourth year, I think? It’s always such a great, positive event – usually with a large turnout. I’ll post a link to the photos once I get them uploaded. Although I’m not sure if I’ll have time to do that before I leave for the Advocacy Summit in D.C. Monday morning. Yikes! I can’t believe I’m leaving so soon for that already.

“We hold these truths to be self-evident, that all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness.” – The Declaration of Independence, 1776

So I am a day late posting this, but better late than never, right? I didn’t tune in to ALL of the inauguration coverage that was happening yesterday (and before yesterday), but I did catch some of it and listened to President Obama’s speech, which I liked. I’m glad that he mentioned health care reform in it, because of course that is something I am passionate about and support. Publicly debating politics or getting preachy about political issues isn’t really my thing, but I will stand up for what I believe in and I don’t expect others to agree with me. I voted for Obama again this election, as I did four years ago and I’m incredibly happy that he won. I suppose I would consider myself a Moderate Liberal – more fiscally conservative but socially liberal. I’m not for outrageous wasteful government spending (who is, really?), but I also believe in many of the social programs that exist to help people. And of course health care is a huge issue for me and one that has affected my own life, very personally, in so many ways. Speaking of that – I’ve been having some major health and arthritis-related things going on over the last month, which I will update about after this post. I promise!

Health care should not be a luxury or privilege for few, but it should be seen as a basic human right, and this I believe with my whole heart and mind. I don’t blindly think President Obama or the Democrats are perfect by any means, but I do sincerely hope that the President and people across all parties will realize the importance of improving our corrupt, archaic, and broken health care system and will do something about it. There are too many people suffering just in our own country because they can’t get decent, affordable medical care when or if they need it. This is wrong and must change.

Anyway, here are some quotes from President Obama’s speech yesterday that stuck with me:

“For we, the people, understand that our country cannot succeed when a shrinking few do very well and a growing many barely make it.

We, the people, still believe that every citizen deserves a basic measure of security and dignity. We must make the hard choices to reduce the cost of health care and the size of our deficit.

We do not believe that in this country freedom is reserved for the lucky or happiness for the few. We recognize that no matter how responsibly we live our lives, any one of us at any time may face a job loss or a sudden illness or a home swept away in a terrible storm. The commitments we make to each other through Medicare and Medicaid and Social Security, these things do not sap our initiative. They strengthen us.

It is now our generation’s task to carry on what those pioneers began, for our journey is not complete until our wives, our mothers and daughters can earn a living equal to their efforts.

That is our generation’s task, to make these works, these rights, these values of life and liberty and the pursuit of happiness real for every American.”

Apologies for taking a while to post again, but I’m dealing with an RA flare-up now – my right thumb and forefinger joints are painful and swollen from yard work I did last week. I know I shouldn’t have been raking and pulling weeds, etc., but I was working for a friend who agreed to pay me to clean up his yard. As I am currently unemployed, well, I needed the money. But in retrospect I wouldn’t have done it if I had known my hand was going to flare up. I have a rheumatologist appointment tomorrow and I’m hoping he can give me a cortisone injection to make this go away. I’ve been taking 20 mg of prednisone for weeks and I’m pretty desperate to get off of it.

Anyway, onto the Summit news! I can’t stress enough how glad I am that I decided to attend The Arthritis Foundation’s Advocacy Summit in D.C. The event was incredibly organized and professional which I found impressive. It was also exciting and empowering just to be with people who were all passionate about improving the lives of those who suffer from arthritis. I met so many nice, interesting people who either have arthritis themselves or have children who have the disease. I loved talking with many of them and hearing their own stories. The Summit also ignited much more of an interest and passion in me to continue doing advocacy work. Actually, I think I would really like to move to D.C. if possible. I fell in love with the city almost immediately and could seriously see myself living there. I don’t know how difficult it would be to relocate, but I decided I’m going to try.

It’s 1:15 AM and I’m exhausted but I want to write a little update about yesterday’s events. My Minnesota group met with Senator Al Franken yesterday evening at his office on Capitol Hill. The meeting went well, I think, and he seemed interested and receptive to what we had to say regarding him supporting arthritis issues and the Patients’ Access to Treatments Act of 2012 (H.R. 4209). Supporting this bill would help improve access to medications for people with arthritis which can prevent disability. It would also end the discrimination and excessive cost-sharing of these medications with regard to insurance companies forcing patients to pay incredibly high co-pays and co-insurance because of how many of the drugs are designated as “specialty tier” medications (i.e. biologic medications which cost thousands of dollars per treatment/month – I currently take one of these, Remicade). Even though Senator Franken spent about 25 minutes with us (which is a long time for these meetings, we were told), I admit I am disappointed that I didn’t get a chance to talk to him and tell him my story of living with arthritis. I didn’t even get to say my name! So, yeah, that’s a bummer – especially since he is the one legislator with whom I was looking forward to speaking. Oh well. Hopefully I’ll get another chance sometime.

Today was a really good day though. The weather was warm and sunny and beautiful. Walking around the Capitol was a surreal experience – I couldn’t believe I was actually there. Our group also sat in for a bit on a session of the House and that was really interesting to see. Other fantastic things yesterday included inspiring, motivating speeches and training we had before our Senate meetings. I continue to meet really nice, wonderful people from all over the country who are here for the summit. And, kind of fun, yesterday evening after dinner I did a little radio interview and talked a bit about how arthritis affects my life. These “hometown radio interviews” are supposed to get passed on to our local stations, however nobody can tell me more information about when they’ll air. It was fun to do though! After Day 2 of the summit, I’m incredibly wiped-out and my ankles are killing me, but I’m also more energized and motivated now than I have been in a long time. The inspiration and excitement continues…to Day 3, I hope!

And – I did start to upload some photos to Flickr if you’re interested: